Comparing the Impact of Symptoms and Health Care Experiences of People Who Have and Have Not Received a Diagnosis of Fibromyalgia: a cross-sectional survey within the PACFiND study

Stefanie Doebl, Rosemary Hollick, Marcus Beasley, Ernest H. Choy, Gary Macfarlane* (Corresponding Author), PACFiND study investigators

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)
6 Downloads (Pure)

Abstract

OBJECTIVE: To compare impact of symptoms, and healthcare utilisation, of people diagnosed with fibromyalgia, people who fulfil criteria not diagnosed and people with chronic pain.

METHODS: We recruited people who had participated in a previous population survey across Scotland and who reported some typical fibromyalgia symptoms or had received a diagnosis of fibromyalgia. Responses to a postal questionnaire were used to define mutually exclusive groups: people with a fibromyalgia diagnosis; who met criteria for fibromyalgia; with chronic pain.

RESULTS: Participants included 85 people with a diagnosis of fibromyalgia, 110 who met criteria for fibromyalgia and 133 with chronic pain. Mean age across groups ranged 57-59 years, but the % female varied markedly: 86%, 64% and 67% respectively. Compared to those with chronic pain, participants with a fibromyalgia diagnosis were more likely to be out of employment due to health. It took an average of three years to receive a fibromyalgia diagnosis and more than half were diagnosed in secondary care (most commonly rheumatology). The fibromyalgia diagnosis and criteria groups were similar in terms of symptom impact, quality of life and life satisfaction, but were worse than the chronic pain group. Participants who had received a diagnosis of fibromyalgia reported the poorest health care experiences.

CONCLUSION: There is an urgent need for a model of care for fibromyalgia to ensure prompt diagnosis, access to evidence-based care and long-term support, with the aim of improving function. The data suggest that diagnosis in men may be overlooked and this warrants further study.

Original languageEnglish
Pages (from-to)1894-1902
Number of pages9
JournalArthritis Care & Research
Volume74
Issue number11
Early online date3 Aug 2022
DOIs
Publication statusPublished - Nov 2022

Bibliographical note

Acknowledgements
The PACFiND programme of work is funded by Versus Arthritis (Grant No. 21958). SD was funded through a University of Aberdeen PhD studentship. GJM and RJH are CI and Deputy CI of PACFiND respectively and conceived the idea for the work in this manuscript and designed the survey with SD. SD and MB undertook the survey, while MB performed the statistical analysis. EC provided input into the design of the DEHLTA survey. The manuscript was drafted by GJM but all authors contributed and provided important intellectual input to revisions. All the PACFiND investigators reviewed the plans for the survey. We are grateful to patient partners Martin Buchan and Doug Dickson who provided input to the survey design, and to Debra DuLake and Simon R Stones who provided comments on the manuscript. We are grateful for the input of Fibromyalgia Action UK to this programme of work. We thank R. Stuart Anderson for help with conduct of the survey. The authors do not report any conflicts of interest. The PACFiND study investigators are (in addition to authors GJM, RH and EC): Professor Corri Black, Dr. Gareth T. Jones, Professor Louise Locock, Dr. Sara J. MacLennan, Professor Paul McNamee, Dr. Kathryn R. Martin, Dr. Peter Murchie (all University of Aberdeen), Professor Catherine Pope, Professor Sue Ziebland (University of Oxford), Professor Karen Walker-Bone (University of Southampton), Professor Chris Eccleston (University of Bath), Professor David A. Williams (University of Michigan), Dr. Neil Basu (University of Glasgow) and Mrs Nicky Wilson (King’s College London). We thank CP, KW-B, DAW, GTJ, LL and SJM for commenting on the manuscript.

Funding:The PACFiND programme of work is funded by Versus Arthritis (Grant No. 21958). SD was funded through a University of Aberdeen PhD studentship

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